I thank the National Press Club for the invitation to give an address on the future of the National Disability Insurance Scheme. Fourteen years to the month, I stood here as the Parliamentary Secretary for Disabilities to talk about how every Australian with a disability deserved a right to an ordinary life.
The club has changed its colour scheme a few times since then. We’re all a bit older… and hopefully a bit wiser.
I want to acknowledge the Ngunnawal and Ngambri people, the traditional owners of the Canberra region – and I pay my respects to their Elders past and present, and extend that respect to Aboriginal or Torres Strait Islander people here today.
I also want to acknowledge the one-in-five Australians living with disability and their families.
I’ve had no greater privilege in my fifteen years in politics than listen to, learn from, and work with so many great Australians from the disability movement.
Great people who have campaigned for decades – Kurt Fearnley, Dougie Herd, Rhonda Galbally, Kevin Cocks, Graeme Innes, Maryanne Diamond, Leah Van Poppel, Meredith Allan, Craig Wallace, Kirsten Deane and Bruce Bonyhady.
Great people we have lost – like Lesley Hall, Sue Salthouse, and Stella Young.
I stand on the shoulders of those fierce warriors – and the millions of Australians they represent.
If you are an Australian living with disability, a family member of a person with disability, or a carer, I want to say something to you right now.
The National Disability Insurance Scheme is here to stay.
It is not going away.
But – and this important – we need to get it back on track.
It’s not a financial imperative – it is core to improving outcomes and improving lives.
Correcting course will not be easy.
It will take time and require the kind of collective effort you showed during the campaign to fight for the NDIS in the first place.
But – and this is important, too – I will work with and for you every step along the way.
I want to brief you and the nation on the work that must be done to secure the future of the NDIS.
I want to explain why we created the NDIS.
Explain how the NDIS lost its way.
And explain why we need to reboot the scheme and disability services and supports – not just the ‘why’ but the ‘how’.
You could call this a ‘state of the union’ address on the NDIS.
Why we created the NDIS
This year marks a decade since the inception of the NDIS.
It was, and remains, a bold initiative.
A big, complex, life-changing piece of economic and social policy.
But it’s driven by a basic human question that has fuelled my own political journey – the itch under my skin that I have always had to scratch – how can we tolerate any Australian being treated as a second class citizen?
I became Parliamentary Secretary for Disabilities in 2007.
Before then, across two decades of working life as a trade unionist;
I thought I knew disadvantage and discrimination,
I thought I knew powerlessness and poverty,
I thought I knew my country.
But I didn’t.
People like Lesley and Rhonda and Stella showed me an invisible Australia.
An Australia that shut out its fellow citizens from education, employment, housing – you name it.
An Australia where an Indigenous person with disability faced a double disadvantage.
An Australia that was unfair. Propped up by a support system that was inefficient and unsustainable.
I met too many people with disability who suffered isolation and disadvantage because others could not see past their impairment.
I heard too many ageing parents speak of the midnight anxiety of who would love their precious child with a disability when they no longer could.
Siblings too who shared these fears.
I saw people who had accidents go from ordinary life to sub-class citizen in a split second - not because of their disability but because of the system that failed them.
And I saw families and carers who willingly put their life on hold to care for a person with disability, but were physically, financially and emotionally exhausted.
In 2007 – and this is a fact some have conveniently forgotten – Australian governments in general and disability services in particular were on course for a socio-economic catastrophe.
The country was paying more and more for worse and worse outcomes for people with disability.
If you think that’s an exaggeration, go back and read the 2009 Shut Out report on the experiences of people with disability, or the 2011 Productivity Commission report into disability care and support.
Labor created the NDIS.
We thought it would save people with disability – and those without – from that catastrophe we could see coming.
And – here’s the thing – we were right.
The NDIS has changed the lives of hundreds of thousands of Australians with disability – and their families.
People like Avi – a six year old from Darwin who loves playing wheelchair basketball and being with her friends, but happens to have a rare genetic neuromuscular disorder.
The supports receives through the NDIS make Avi stronger and more independent every day.
Not only that, the assistance enables Avi’s mum, Bethan, a former ballet dancer, to open her own Baby Ballet school.
Eleven year old Ace will tell anyone who’ll listen he’s a great swimmer and ‘a pro’ at riding a horse, but Ace was born non-verbal and needs assistance with everyday activities
He now has a communication device and a speech therapist – and can speak for himself with the aid of technology.
And the NDIS is a lifeline for people like Greg and Kevin.
Kevin, a 47 year old First Nations man is into arts, crafts and woodwork. He also has an intellectual disability and requires 24-hour care.
When he lost his mum, Sally, Kevin’s dad Greg took over sole responsibility of his son’s care.
Thanks to the NDIS, Kevin is learning to garden and cook and further develop his social skills.
NDIS participants like Kevin and Ace and Avi were shut out of the mainstream back in 2007.
The NDIS has literally changed the lives of hundreds of thousands of Australians like them, and it saved a disability system from collapse.
The truth is that NDIS is the difference between a life and a living death for many vulnerable Australians.
And – as a nation – every state and territory and every community has directly benefited – economically and socially – from the NDIS.
Australians overwhelmingly support the scheme.
Australians witness the difference it makes to families, communities and country.
Remember, one in five Australians has a disability.
We are all touched by it.
Every one of you here today at the NPC knows someone with a disability.
Think of them, right now, and tell me the NDIS isn't a good idea.
Australians know the NDIS is as fundamental to our social democracy as Medicare and universal superannuation, fair pay and the pension.
Built on the great Australian idea of the fair go.
The NDIS is something all Australians can be proud of.
But a decade of mismanagement means it’s in trouble.
Fraud and inefficiencies have led to a narrative where cost overrides the reality of return on investment.
For every dollar invested in the NDIS, it delivers a $2.25 return to the Australian economy. If only all government interventions or private businesses could boast that.
How the NDIS lost its way
One of the measures of a great reform is that it outlives its government.
The NDIS has outlived the Rudd-Gillard governments and the Abbott-Turnbull-Morrison governments – testament to the strength of the reform – testament to the strength of the community support.
But there’s a difference between surviving and thriving.
During the last nine years, the NDIS was under constant attack from a revolving door of disgraced disability ministers.
The Coalition’s record of malign neglect is appalling.
They muzzled the National Disability Insurance Agency – wouldn’t even let the NDIA choose its own IT system or hire enough people to run the Scheme;
They stacked the NDIA board with political confederates;
They tried to bulldoze through a reform they called Independent Assessments that was really just Robodebt 2.0;
They betrayed people with disability by leaving the NDIS wide-open to fraud;
That’s why one of my greatest regrets is that the NDIS has been at the mercy of administrative vandals for 90 per cent of its existence.
The fact it survived is a credit to the dedication of people with disabilities, their families, advocates and allies, service providers, unions, and the never-to-be-underestimated decency of the Australian people.
But the NDIS is not what it should be.
It is not delivering the outcomes Australians with disability need and the Australian public expects.
For the NDIS to reach its potential, it needs a reboot.
And my colleagues and I are strongly committed to deliver on the "how" not just the "why".
Let me explain what I mean.
Rebooting Disability Services and Supports
In the days, weeks, months since we were elected, this government has worked to deliver on our promises – for me, that is working every day to get the NDIS back on track.
Because I know every day counts in the lives of people with disability and their families.
Last October, I appointed an expert panel to conduct an independent review of the NDIS.
That panel – co-chaired by Bruce Bonyhady and Lisa Paul – is consulting widely and will report back to me this October on:
The design, operations and sustainability of the Scheme;
And how we build a more responsive, supportive, sustainable market and workforce.
That doesn’t mean we’re sitting on our hands until the final report.
I’ve always believed the best way to safeguard the integrity of the NDIS is to put more people with lived experience in leadership roles.
That’s why one of my first major acts as Minister was to appoint disability advocate Kurt Fearnley as Chair of the NDIA board.
We’re lucky to have a leader of Kurt’s calibre.
And we’re proud that people with disability now make up half the NDIA board.
Under the Coalition, the efforts of hard-working staff were smothered by clay layer of management that resisted progress.
Since becoming Minister, the value of the grassroots NDIS staff has stood out to me.
These good people deserve kudos for the work they do, as well as sustaining their vocation for working in disability under the previous soul-destroying administration.
A culture shift has breathed new life into the NDIA and I want to take this opportunity to acknowledge the contribution of new CEO Rebecca Falkingham and the refreshed executive of the NDIA.
We also said we’d crack down on fraud and we’re doing it.
Last October we created a Fraud Fusion Taskforce.
It now has 38 investigations underway, involving more than $300 million in payments.
Criminal syndicates took advantage of the Coalition’s shoddy administration.
Tip-offs are increasing, with volumes almost double from this time last year.
In January there were 1300, tip-offs; February – 1500; and in March – 1700.
I can’t go into detail about ongoing investigations, but it is infuriating that crooks are stealing from people with disability.
Every dollar of NDIS funding must go to people with disability.
Another area we couldn’t wait until October to act upon is the warehousing of NDIS participants in hospitals.
In 2021, a Victorian Government analysis found that, on average, it took 160 days to discharge NDIS participants after they were medically ready.
Imagine that was you: You’re ready to go home but have to spend another almost half a year waiting, while others languish on hospital waiting lists - makes no sense.
It’s not just an immense waste of hospital resources but a return to the Dickensian reality the NDIS was designed to end.
It is an insidious violation of human rights.
Our Government put people and supports in place to slash the bedblock in hospital discharges.
We’ve already reduced delays from 160 days to 29 days – and saved the hospital system up to $550 million.
We’re tackling another inherited problem too – the 400 per cent increase in appeals of NDIS decisions to the Administrative Appeals Tribunal.
Those appeals forced participants to undergo months and years in exhausting litigation.
Seventy per cent of the legacy cases parked in court last May are now resolved.
In summary, we have been busy.
But as important as these changes are, they’re not enough.
To deliver the outcomes that will change the lives of more Australians with disability and secure the sustainability of the NDIS, we need to deliver systemic reform.
And – let me be clear – I mean systemic reform of the entire disability support eco-system – the NDIS, mainstream and community services.
When I talk about rebooting disability services that’s what I’m talking about: systemic reform.
Systemic reform
Let me quickly detail the fundamental systemic flaw identified by NDIS participants:
The system is too rigid.
It throws up Kafkaesque barriers to access, it lacks empathy, gouges on prices, is too complex, and often traumatising to deal with.
People with disability often felt caught between some predatory providers and an impersonal government agency.
We must improve the participant experience, we must make people’s lives easier rather than harder if we do we reduce waste, inefficiency, and inflationary costs.
To any journos in the room, this is not a Budget dump; I’m not here to steal the Treasurer’s thunder.
What I am outlining are six policy directions that we will work on to deliver better outcomes for people with disability and, in the process, help secure the ongoing sustainability of the Scheme.
An approach endorsed by the Board and the NDIA leadership.
1. The NDIA workforce
Our first systemic reform is to increase the NDIA workforce and sharpen its specialisation.
To improve the participant experience we must focus on the people they deal with in the Agency – and the people who support them in the community.
That means lifting staff caps, returning some call centre functions in-house, and getting the culture right so we reduce staff churn – points emphasised by The Joint Standing Committee on the NDIS in its interim report on Capability and Culture of the NDIA.
The bottom line is, to improve outcomes we need to nurture a better relationship between staff and participants.
We also need to have the capability and specialisation to proactively intervene to fill service gaps in places like rural and Indigenous communities, and regional and remote Australia.
And we must update our systems so that people with disability only have to tell their story once.
Investing in better resources and better systems will also avoid cases where people in the same family, with the same or similar disabilities, receive different funding plans.
Ultimately, greater investment in NDIA capability equates to participants being treated with understanding and humanity.
2. Long-term planning
Our second systemic reform is to move to long-term planning.
Short-term planning just isn’t working.
Frankly, it’s stressful, debilitating, frustrating and nonsensical that – every year or six months – participants have to ‘prove’ they are still disabled.
Amputees must prove they’re still missing a limb.
People who are blind must prove they still can’t see.
People who have Down syndrome must prove that they still have Down syndrome.
Instead of causing grief and wasting resources I want us think long term.
Why not have multi-year plans – more flexible and sustainable; freeing up more time to produce better plans that deliver better outcomes for people with disability – and more predictability for all involved.
Longer-term plans cannot be set-and-forget, though.
They need to be able to adapt to changes in participants’ condition and their lives – the needs of a person with Huntington’s disease, for example, change over time.
3. Addressing spiralling expenses
My third systemic reform is the need to address spiralling expenses.
Reasonable and necessary supports lie at the heart of the NDIS. It is a bounded concept. Supports must be reasonable AND necessary.
I also just said I want to maximise the benefit of every NDIS dollar we spend.
Let me be clear: I’m talking about maximising the benefits for participants, not providers.
Some providers are over-charging for goods and services…
…assuming that, as NDIS packages are taxpayer funded, they’re fair game for doubling and tripling of prices… likened to a wedding tax.
If one provider is over-charging for their service it means a participant cannot afford another service they might need.
I expect the Independent Panel to provide recommendations on ways to maximise the participant outcomes for every NDIS dollar spent.
Participants should be treated as valued clients, not as an ‘ATM’.
We could trial such things as blended payments to improve incentives to achieve outcomes, rather than be dependent on more supports.
We must also return to the underlying goal of any intervention and that is to reduce the need for support over time and increase participants’ independence in their daily living.
The parent of any child on the NDIS will tell you they hope to exit the scheme as quickly as possible.
I’m pleased to announce today the NDIA will fund a pilot program, in partnership with Telethon Kids Institute in Western Australia, that will examine whether pre-emptive intervention for children showing early behavioural signs of autism may reduce the level of support required later in life.
Some 700 families in WA will be invited to be part of the pilot, and if shows that intervening early can assist children to have improved outcomes as they develop, it could provide have exciting prospects for future generations and for early intervention mainstream services outside the NDIS so that NDIS is not a life-boat in the ocean.
4. Better outcomes from Supported Independent Living
Our fourth systemic reform is to review Supported Independent Living – or SIL.
Supported independent living is designed to allow people with higher needs to live in their home but with a significant amount of help – 24/7 if necessary.
Currently, the program is delivering poor outcomes for many participants.
In some cases, SIL splits up families or couples and drives people into institutional settings that are in some circumstances inappropriate and not in their best interests – in terms of safety, quality and outcomes.
The NDIS Review is already looking at ways to get better home and living decisions for participants.
Integral to this is housing supply, rental market accessibility, co-tenancy models, the role of community housing and other innovative housing and accommodation models designed by people with disability and their families to deliver better outcomes.
5. Eliminate unethical practices
Our fifth systemic reform is to target the misuse of NDIS funds – to go beyond tackling criminal syndicates to tackling unethical practices.
And through a renewed focus on evidence and data – we can get rid of shoddy therapies that offer little to no value to participants or desperate parents.
Unethical practices include:
- pressuring participants to ask for services or support ratios they don’t need;
- spending participants’ money contrary to their plan;
- asking for or accepting additional fees for a service; and
- offering rewards for taking particular services not on a participant’s plan;
Let me stress, there are many great service providers from long-standing not-for-profits to new family-run, small businesses.
But untrustworthy providers who prey upon participants, make them feel ‘de-humanised’, exploited as ‘cash-cows’.
They taint the reputations of quality service providers and need to be drummed out of business.
More NDIA staff in place with the skills to ensure providers deliver outcomes and don’t over-charge is the answer.
6. Increasing community and mainstream supports
My sixth systemic reform is fundamental: the NDIS needs to be surrounded by increased community and mainstream supports.
When I say increased, it is more a case of mainstream services actually delivering on inclusion and universal service provision as they have always been meant to do.
I hear from many individuals and families that a form of unintentional division seems to have crept in - where if you have a disability you take the NDIS line and if you don't you take the mainstream line.
People's lives aren't dictated by what's a national scheme or a state scheme, these are their lives, we need to look at how we better cohesively and holistically support this, together.
Existing mainstream services and facilities, like health, education, and transport need to be more accessible and supportive for people with a disability – to foster inclusion, not segregation.
At the same time there needs to be investment in community-based programs – sports, recreation, education – and ensuring these programs are better integrated in the support mix for NDIS participants.
It's about doing these things in addition to properly funding the NDIS.
Because the NDIS in isolation can’t deliver independence.
And because it was never conceived or promised to support every Australian with any disability.
The recurring sentiment across the community is that ‘it takes a village’ to ensure Australians with disability get to live the ordinary life many take for granted.
And I acknowledge the work of my colleague, the Minister for Social Services, Amanda Rishworth, for driving the overarching work on Australia’s Disability Strategy to help us achieve this.
And the states must step up!
As I’ve said in many other places, the states can’t have it both ways. They can’t retreat from supporting people with disability outside the scheme and on the other hand have a diminishing contribution to the NDIS.
States need to honour their commitment to their citizens with disability and provide them with high quality, inclusive healthcare, education, transport, housing, justice as is their responsibility.
Conclusion
There is a real sense of urgency – across the community – to make the NDIS work for participants.
For all those critics of the NDIS.
Our Government will work with the disability community to design and implement improvements that need to be made.
Public trust and confidence in the Scheme will be dependent on these reforms serving the best interests of the participants.
That is the litmus test.
We don’t want the patchwork reform of our predecessors which was like a badly renovated house – rooms tacked on without rhyme or reason, hallways that lead nowhere, and doors that don’t open.
It is unacceptable that vulnerable people find this mess impossible to navigate or are totally abandoned by the scheme.
That fuels the desire for substantive, systemic reform.
But for any reform to work, we need the engagement of the disability movement.
We need – I need – your experiences, your input, your support.
And having met you in 2007, having seen what you were capable of in the campaign for the NDIS, I have no doubt we will succeed.
Australians support the NDIS because it’s life-changing for people with disability and their families – transformative.
It represents what’s best about Australia - that we look after each other and, most importantly, look after those who need extra support.
It sees the whole person, not just the impairment empowering them to participate in the life of our country - on their terms.
We are a lucky country. And we should not exclude anyone from the opportunity Australia has to offer, because of a disability.
This extends beyond "the right thing to do", it is the best thing to do for our country, for those with disability and without disability, for our economy.
Without the NDIS, the costs to Australians would be far greater than today.
Ten years on from the very first trials in The Barwon and Hunter regions, Australia’s NDIS is embedded as a fundamental government promise on a level with Medicare.
Medicare is the idea that the health of any one of us, matters to all of us.
At the centre of NDIS is the understanding that disability could affect any one of us or our family.
And talking of Australian values, there is no greater embodiment than the disability movement.
All of which is shorthand way of expressing the privilege it is for me to stand beside the advocates of the disability movement – and serve the millions of Australians they represent.
If you are an Australian with a disability, let me say this to you.
It is core business of Labor to restore and reform the NDIS.
To undo the drift of the last decade, ensuring the NDIS is secure and sustainable as a source of world class, life-changing support – delivering for the next generation of Australians who will have need of it.
I can promise every Australian who cares about the future of the NDIS that the size of the challenge in front of us is more than matched by the strength of the Albanese Government’s determination to succeed.
And if you will let me conclude on a personal note…
…after the bitter disappointment of the 2019 election, I came to the understanding that the Universe does not grant re-runs.
But with every precious minute in the job as NDIS Minister – I do feel I’ve been given a remarkable second chance.
To serve where my passion beats.
I’ve said before, working with disability advocates and experts, with Julia Gillard and Jenny Macklin, and literally thousands of Aussies living with disability has been a discovery and a privilege.
I know there is nothing I will ever do that is more important than securing the future of the NDIS.
I am here because of you.
I am working for you.
And together I know we can create the NDIS that you deserve.